Preliminary testing of "roadmap to parenthood" decision aid and planning tool for family building after cancer: Results of a single-arm pilot study

被引:2
作者
Benedict, Catherine [1 ,2 ]
Ford, Jennifer S. [3 ,4 ]
Schapira, Lidia [2 ]
Davis, Alexandra [1 ,5 ]
Simon, Pamela [6 ]
Spiegel, David [1 ,2 ]
Diefenbach, Michael [7 ]
机构
[1] Stanford Univ, Sch Med, 401Quarry Rd, Stanford, CA 94305 USA
[2] Stanford Canc Inst, Stanford, CA USA
[3] City Univ New York CUNY, Hunter Coll, New York, NY USA
[4] City Univ New York CUNY, Grad Ctr, New York, NY USA
[5] Palo Alto Univ, Dept Clin Psychol, Palo Alto, CA USA
[6] Lucile Packard Childrens Hosp Stanford, Palo Alto, CA USA
[7] Northwell Hlth, Feinstein Inst Med Res, Ctr Hlth Innovat & Outcomes Res, Manhasset, NY USA
关键词
cancer support intervention; decision aids; decision-making; eHealth; fertility; young adult oncology; REPRODUCTIVE CONCERNS; FINANCIAL TOXICITY; INFORMATION NEEDS; YOUNG; ADOLESCENT; VALIDATION; CONTRIBUTE; QUESTIONS; CONFLICT; MODEL;
D O I
10.1002/pon.6323
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Objective: Many young adult female cancer survivors need to use reproductive medicine, surrogacy, or adoption to have a child. This study pilot tested Roadmap to Parenthood, a web-based, self-guided decision aid and planning tool for family building after cancer (disease agnostic). Methods: A single-arm pilot study tested feasibility, acceptability, and obtained effect size estimates of the Roadmap tool. Participants, recruited via hospital-based and social media strategies, completed a baseline survey (T1), accessed the Roadmap tool (website), then completed surveys at one- and 3-months (T2 and T3, respectively). Feasibility and acceptability were evaluated with rates of eligibility, enrollment, and survey completion, and feedback. Pairwise t-tests and repeated measures ANOVA evaluated usage effects. Effect size estimates were calculated. Results: Participants (N = 98) averaged 31 years old (SD = 5.61); 71% were nulliparous. Enrollment rate was 73%, T1-T2 completion rate was 80%, and 93% accessed the website. From T1-T2, participants reported improvements in decisional conflict (p < 0.001; Cohen's d = 0.85), unmet information needs (p < 0.001; Cohen's d = 0.70), self-efficacy (p = 0.003; Cohen's d = 0.40), and self-efficacy for managing negative emotions (p = 0.03; Cohen's d = 0.29); effects were sustained at T3. There was no change in reproductive distress (p = 0.22). By T3, 94% reported increased consideration of preparatory actions and 20%-61% completed such actions. Conclusions: The Roadmap intervention was feasible to conduct, acceptable to users, and led to improvements in key psychosocial outcomes. Future directions will test intervention efficacy in a randomized controlled trial with a larger sample and over a longer period. A web-based tool may help women make decisions about family building after cancer and prepare for potential challenges.
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页数:10
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共 45 条
[11]   Fertility Issues in Adolescent and Young Adult Cancer Survivors [J].
Benedict, Catherine ;
Shuk, Elyse ;
Ford, Jennifer S. .
JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY, 2016, 5 (01) :48-57
[12]   Young Adult Female Cancer Survivors' Decision Regret About Fertility Preservation [J].
Benedict, Catherine ;
Thom, Bridgette ;
Kelvin, Joanne F. .
JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY, 2015, 4 (04) :213-218
[13]   Racial and Sexual Minority Women's Receipt of Medical Assistance to Become Pregnant [J].
Blanchfield, Bernadette V. ;
Patterson, Charlotte J. .
HEALTH PSYCHOLOGY, 2015, 34 (06) :571-579
[14]  
Chew LD, 2004, FAM MED, V36, P588
[15]   Validation of screening questions for limited health literacy in a large VA outpatient population [J].
Chew, Lisa D. ;
Griffin, Joan M. ;
Partin, Melissa R. ;
Noorbaloochi, Siamak ;
Grill, Joseph P. ;
Snyder, Annamay ;
Bradley, Katharine A. ;
Nugent, Sean M. ;
Baines, Alisha D. ;
VanRyn, Michelle .
JOURNAL OF GENERAL INTERNAL MEDICINE, 2008, 23 (05) :561-566
[16]   Adolescent and Young Adult Oncology, Version 2.2018 [J].
Coccia, Peter F. ;
Pappo, Alberto S. ;
Beaupin, Lynda ;
Borges, Virginia F. ;
Borinstein, Scott C. ;
Chugh, Rashmi ;
Dinner, Shira ;
Folbrecht, Jeanelle ;
Frazier, A. Lindsay ;
Goldsby, Robert ;
Gubin, Alexandra ;
Hayashi, Robert ;
Huang, Mary S. ;
Link, Michael P. ;
Livingston, John A. ;
Matloub, Yousif ;
Millard, Frederick ;
Oeffinger, Kevin C. ;
Puccetti, Diane ;
Reed, Damon ;
Robinson, Steven ;
Rosenberg, Abby R. ;
Sanft, Tara ;
Spraker-Perlman, Holly L. ;
von Mehren, Margaret ;
Wechsler, Daniel S. ;
Whelan, Kimberly F. ;
Yeager, Nicholas ;
Gurski, Lisa A. ;
Shead, Dorothy A. .
JOURNAL OF THE NATIONAL COMPREHENSIVE CANCER NETWORK, 2018, 16 (01) :66-97
[17]   A systematic development process for patient decision aids [J].
Coulter, Angela ;
Stilwell, Diana ;
Kryworuchko, Jennifer ;
Mullen, Patricia Dolan ;
Ng, Chirk Jenn ;
van der Weijden, Trudy .
BMC MEDICAL INFORMATICS AND DECISION MAKING, 2013, 13
[18]   The Role of Social Media in Enhancing Clinical Trial Recruitment: Scoping Review [J].
Darmawan, Ida ;
Bakker, Caitlin ;
Brockman, Tabetha A. ;
Patten, Christi A. ;
Eder, Milton .
JOURNAL OF MEDICAL INTERNET RESEARCH, 2020, 22 (10)
[19]   The Development of a Financial Toxicity Patient-Reported Outcome in Cancer The COST Measure [J].
de Souza, Jonas A. ;
Yap, Bonnie J. ;
Hlubocky, Fay J. ;
Wroblewski, Kristen ;
Ratain, Mark J. ;
Cella, David ;
Daugherty, Christopher K. .
CANCER, 2014, 120 (20) :3245-3253
[20]   The common-sense model of illness representation: Theoretical and practical considerations [J].
Diefenbach, MA ;
Leventhal, H .
JOURNAL OF SOCIAL DISTRESS AND THE HOMELESS, 1996, 5 (01) :11-38